The passive child/pretending to be 'normal'

[illy]

Oh yes i am new here and have jsut ben gven this section by one of the members

 

My Son is exactly like that, they see him as angel at school with no obsessions etc.

 

However when i take him in, the children have to put there lunchboxes on a rack and he always has to ahve his on the top shelf, if there is no room we have to move boxes!.

Also this first week back he has gone in the class and had to go straight to where the books are even if he doesnt look at it, he has to go there!

 

he told me on the first day that he hadnt swore or thumped and i think they had gone over the School and Class Rules, 5 mins down the road he said the F word to me 5 times, and he is only five!!

 

The Ed Psych and Senco cant see anything wrong with him either and although i think he gets 7 hours a week help but not one to one and some of this is took with toileting he doesnt get enough help!

 

They say they have to wait till he is atleast 2 years behind which according to the psych he is in a few things i see more at home, and a few things he is advanced in like Puzzles which they keep testing him on! lol

Anyway i hink i have gone on long enough

Thanks for listening

 

Hugs illy x

[TinaP]

Hi there..

i have posted on here b4 but not for a while..i posted about my friends little boy who is now nearly 10...i am sure he has AS or at least some degree of it...i have been emailed by someone who's son has it and she sed i described her son exactly...the prob is my friend and her partner just dont buy it...they think he may have a little AS as they put it but that he is just a very disruptive naughty boy...alot has happened to my friend..she was accused of emotional harm and he was taken into care....she didnt harm him by the way he was already like this..the thing is she says she hates him but i dont think she does..she doesnt understand him and so she says she hates him because she doesnt know how to deal with it...i now find when im there that watching everyone in there family that they are almost victamising him..he cant do right from wrong and he gets into trouble at every turn....he has started stealing food from the cuboards early in the mornings wen all still in bed ( cereal bars..penguins..choc cake..all sweet things)...he has these things taken off him as punishment for this...however i think he takes them bcoz he isnt allowed them...steals them and the cycle starts again..i know this makes my friend sound bad but she isnt..she is wonderful..but after 3 yrs of this she no longer has the will to cope and on occasion the will to live....i would so like to bring him home but that wouldnt solve the prob i know...can he cover up that he is AS some of the time..i wonder..but he has most of the traits especially the obbsessions..is very articulte and a very bright boy...but when i read all the descriptions on here im sure he does have AS..dont know how to get it thru to my friend without falling out with her..been friends for more than 25 yrs...he is her stepson by the way......sorry for goin on..just not sure what to do..been writing about it all in a diary..dont know weather to show her it..its very frank.......Tina x

[Elanor]

Tina

 

You're in such a difficult position, and I've been thinking about your post since yesterday, without coming up with anything particularly helpful.

 

A child needs his parent to help him learn to live with an ASD, and to fight for the services he needs but which are so hard to get. Essentially there is only the parent, there are no services waiting to step in and help him with his AS.

 

So perhaps the best help you can give, is to support his step-mum as much as you can - in small steps. Accepting that a child has a disability is a very difficult thing, and many of us are resistant to the idea. When a parent is feeling low, having to take on the challenge of coping with a strange and complex disorder, can simply be too much - it's easier to hate the child, and to blame him for his behaviours. But as you realise, it isn't his fault. It's not your friend's fault either - but she and his dad, are the only people who can make a difference.

 

Is your friend clinically depressed? Can you encourage her to seek treatment? Can you suggest that she meets her GP to discuss the behavioural problems, and offer to go with her? If she can get a referral to the local CAMHS (Child and Adolescent Mental Health Service), then it is a start in the long process of seeking diagnosis.

 

I do understand that the background you describe makes all this so much more difficult to do in practice.

 

However, even as a friend to the step-mother, your first concern must be the welfare of the child. If you see it getting to the stage where he is at risk of harm (which might be closer than it appears - this can be a pressure-cooker) then you will only have one choice, and that is to protect the child.

 

Elanor

[TinaP]

Hi Elanor..

thanx for your advice...i have been writing in my diary long into last night about the situation..and your right about one thing..the child comes first...i would never stand by and watch a child be abused wether it be mentally or otherwise....i know that my friend would never knowingly hurt a child...and its difficult for them to take in that there may be something wrong..he has seen a child therapist but frankly i think it is going now where..my friend is waiting to see a councillor herself and her partner already has councilling....they have 2 other children..1 of which is my godaughter...i will continue to watch things and i will be there for my friend to as i always hav been and she for me..we hav a lot of history which is why i know she wont ever harm him intentionally....but as u say..he must come first if it came to it..things might be less stressful now school has resumed...i dont know...im between a rock and a hard place an i can tell you i dont like it much...his therapist says he doesnt fit the criteria for AS..she is a trainee and see's him once a week for half an hr....she also sed she couldnt say one way or the other because she isnt qualified to do so....neither am i but i have done alot of reading and asking and i believe without blowing my trumpet that i know more than she does...i wish i could give u all the background about this but it would take me hrs of typing and im sure u have better things to do...im thinking of studying child Psychology at adult night classes...anyway thanx again for your reply...Tina.

[Elefan]

This post has been dormant for a very long time, but I would be interested to see what posts it receives from the wide member base the forum has nowadays.

 

What happens when the passive child who has meltdowns at home, reaches the stage where they cannot inhibit anymore and refuse to go to school at all!? Does the LEA 'wake up' to the problem then!?

 

 

Kindest regards,

 

Elefan

xx

[darky]

in my opinion no, not genraly. the schools, leas do not listen until all too late. they then try and put in place some recommendations but often its too little too late and then the blame goes on the very people who have been warning of this situation for years, the parents.

i have heard so many times, "we dont have this problem in school, its a home problem"

 

i am actuly quite lucky now, i have my son and daughter in much more understanding schools. i have teachers and sencos who listen and understand. my sons senco told ME how common it is for these kids to hold in all day and release when they get home. my son and daughters senco actively encourage me to go into school and tell them of any anxieties that the kids have before things spiral out of control.

[Bullet]

Ds is passive and very gentle. When we go out he sort of zones out, shakes his head a lot, his delayed echolalia increases, he'll say the same words (usually counting) over and over again. But there's rarely any screaming and thrashing unless we have to backtrack. So people think he's normal and what's the worry. And then we go home and he spends up to two hours doing the same monotonous activity over and over if we've gone somewhere different from the norm. It's good for me because he's mostly manageable, but bad for him because he's still struggling and it's only because I'm with him all the day and can see the signs of when he's getting upset.

[jb1964]

My daughter has only recently been diagnosed. Up until she was in her last year of primary - she was a classic passive child at school and massive problems at home - we 'coped'!! with this until she was 11yrs old - when suddenly all her problems accumulated into enormous problems, resulting in her not eating for six months and a serious weight issue - all of a sudden people were listening and desperately trying to do something. Once they diagnosed AS everything became apparent - and I feel so annoyed for all those years of hell through school when we forced her and didn't know what the problems were, when teachers kept telling us not to worry about things (that some children are quieter than others/develop socially later than others etc) and for her Paed. not listening to us (just that she was strong willed). Since Comp. she has suffered 'rages' in school as well as home.

 

The thing is when children are diagnosed later - it can be 12/13yrs before you start to try to get help - parents don't know the correct routes/help/assistance etc that they should/can get and by the time this is implemented the children are in their option years - eventually they are either pulled out of mainstream or become so behind because of this.

 

If it wasn't for this forum I wouldn't have a clue what I'm supposed to do - and before coming on here I didn't even know what LEA/EWO etc was. I know when the school talked about my daughter seeing Ed. Sike - I really thought that was someone's name (and I'm not kidding - I'd never heard of it!!!).

 

Jb

Edited May 9, 2006 by jb1964

[curra]

M has gone through several phases, phase 1: depression and anxiety at home, phase 2: aggressiveness at home and school - with complaints from other parents - so he was referred to child psychiatrist. He was given medication and had side effects. Phase 3 : M is in school refusal and worse academic achievement, so school is (finally!) going to request a statutory assessment. Meltdowns are never at school. This whole process has taken 2 years and I feel that too much time has been wasted and there has been too much unnecessary suffering for my son. Needless to say that I have been a pain in everybody's neck and will continue to be until my son's needs are met.

 

Curra

[Tez]

Do you have a child with ASD who is passive or pretends to cope?

 

A has always been a passive child who tries hard to fit in and behave in the way that is expected of him. When he first started school, he struggled to understand the complex rules and was always in trouble. He didn't like this, he hates to be the focus of attention so he quickly learnt to internalise his problems and became extremely introverted. As a parent, I can recall thinking that it was as though somebody had attached a vacuum cleaner to him and sucked all the personality and vitality out.

 

Of course, the school loved this. He became the ideal pupil. He was intelligent, was quietly invisible and had a mum who quietly sorted all his problems out at home and who even taught him what the school were failing to teach. He didn't really explode at home either. He would just lodge himself in his obsessions but he was extremely anxious, had moments of extreme hysteria, times when he'd refuse to go to school and never slept. We were also aware that he was being bullied and that he was having problems with his sequencing his work and maintaining friendships.

 

How do you get your child's difficulties recognised by professionals?

 

I stopped trying to sort all his problems out quietly myself and sent weekly emails to the Deputy Head detailing all his problems and either suggesting resolutions or asking for intervention. Instead of telling A that he had to put up with the actions of other pupils, I reported every incident. I followed up on every email and made sure that my concerns were being taken on board. Everything that was a concern to A was reported in writing, no matter how small.

 

Have to say that I didn't get round to doing this until he sustained a broken wrist due to bullying at school, this was some 8 years after I should have started and it was the Educational Welfare Officer who told me to get a dx and write to the school on weekly basis to get him support. I had spent 8 years verbally trying to convince his schools he needed help without success.

 

The dx was easy once I got the GP to refer him, but that required a letter from the EWO saying that he was at risk in the school environment and that she thought he had an ASD. I had spent years telling the GP there was a problem, but he merely shrugged his shoulders and said that we were coping so didn't need a referral.

 

Do you think the child who is trying to be invisible wants attention or would rather stay invisible?

 

I can only answer for A but he wants to stay invisible. Initially, he hated me for bringing his problems to the school's attention but as my persistence started to ease the pressure on him, he started to see the merit in bringing his difficulties into the open. Fortunately, the Deputy Head realised that A wanted to fade into the background and was as discrete as possible.

 

Should the LEA put provision in place for a child who is coping or appearing to cope at school?

 

If the child is only pretending to cope, provision should be put in place. I started sorting things out too late for A and he eventually had a break down and started self-harming. All experts and the LEA are agreed that had he had support from Infant school it is unlikely that his anxieties would have got this bad. When I started emailing details of all his difficulties to the school the Deputy Head took the time to get to know A. I sat at meeting with the LEA a few months back and heard him admit that he was shocked to discover that as he sat at the back of classes watching this child, who everyone considered to be an ideal pupil with no behavioural problems, it became obvious to him that this in fact was a child who had very severe difficulties that no-one had noticed. Once he was allocated some one to one support it was obvious to the one to one helper that A could not cope at all in a mainstream environment but had effectively conned everyone into thinking he could.

 

How do you convince the LEA that the child is only pretending to cope?

 

By documenting all the problems no matter how small and enlisting medical support. Also try to find an ally within your child's school who will help you fight for their needs. For us it was the Deputy Head, but it could be a SENCO, HOY or a teacher. Look around until you find someone in the school who will help you, don't assume the first person you try or the person who should be helping is the one. Be persistent. If plan A doesn't work, have a plan B and plan C ready.

Edited May 9, 2006 by Tez

[justamom]

This post could not have come at a better time for me... The past 2 days have been really difficult with my son because his behaviour at school is changing, he is at passive at school a the moment and comes home and "explodes" because he has been conforming all day..but he told me yesterday that he is worried about his behaviour at school, he is shouting out more in class and he is generally misbehaving in class. I asked him why he thinks he is suddenly doing this and he said that he feels comfortable enough with his class mates to be himself, hence the behaviour issues.... He is asking for help because he feels that he cant stop this behaviour and he is tired of having to "conform" all the time.

 

I am not sure what the response will be from the school i will have a talk with the senco, and try and make them aware of his "pretends to cope" but like Tez my child does not like me to bring up his difficulties.

 

Justamom

[marshmallow]

Just found this post when doing are search and seemed to be a good place to post a question, sorry if it been posted before. We were first alerted to the possibility that DS was showing signs of AS when he was 3 and had a psychological assessment. He is medicated for ADHD and when going through that it was again pointed out that he had strong asd tendancies- AS. He stuggled alot during his first year and a bit at school but seemed to cope, though didn't learn anything, and needed carrying there each day screaming, and would be a nightmare at home. The school were not interested in discussing this as he was 'Quite and well behaved' when he was there (sitting passively in a corner with lego!). We took him out and Home educated him for a while until we moved and found hi a new school. They have been brilliant with him but I thinf he is still along way behind educationally. He is very very passive in the school environment, his teacher said that to us, he tries very hard to fit in and has started to play and talk to some children, he has had 1-1 support with some of his work, although this is unofficial. he doesn't scream going into school anymore, though continues to 'let out his stress at home' at the end of the day. His teacher recognised his needs for help in social situations and with routines and put in that help. It all sounds very good I know BUT When continuing the assessment proccess for DS his Psych visited his school his teacher said he was coping and therefore they are stopping the DX process, he said to us that our situation was not uncoomon that DS was coping in school, and then letting it out at home, but we have just recieved a copy of a letter he sent to the gp saying he wasn't referring him for any further assessment due to fact that he was coping at school. We therefore are left in limbo with no help, a 'complex' son who is starting year 2 not being able to read, write, count beyond 10, no proper friends and no support. What do I do now?

 

DH spoke to Psych, think its sorted

Edited July 28, 2006 by marshmallow

[Valiant_Skylark]

Sorry, I haven't been reading this thread in any detail for some time, (but I know it is close to Nellie's heart) so apologies if this has been mentioned before...

 

I was reading one of the "Health Issues" books entitled "Autism" by Sarah Lennard-Brown when I came across in chapter 5, page 53:

 

" Encouraging communication

'We have several children with Asperger's(sic) syndrome at the school. As a rule, they are very law-abiding and little trouble. In fact it is very easy, I think, to underestimate how difficult they are finding school. Certainly some of the children we have do not display their anxiety at school. They appear to be coping most of the time, but can become very distressed when they get home. It took me a while to grasp this idea. If teachers are not seeing signs of distress at school, they can easily assume that tantrums at home are nothing to do with them. Now I realise that children with autistic spectrum disorders take a while to process what happens at school. They may not react to anxiety, which started at school, until many hours later. We now have a policy of encouraging parents to let us know about any anxieties that may be building up, so that we can nip the problem in the bud.'

(Malcolm, senior school headmaster)"

 

Would this be a good book to take to take into school to show the headteacher if pleas for help and understanding were falling on deaf ears?!

 

vs xx

Edited September 13, 2006 by Valiant_Skylark

[rainbow queen]

This post has been dormant for a very long time, but I would be interested to see what posts it receives from the wide member base the forum has nowadays.

 

What happens when the passive child who has meltdowns at home, reaches the stage where they cannot inhibit anymore and refuse to go to school at all!? Does the LEA 'wake up' to the problem then!?

Kindest regards,

 

Elefan

xx

 

 

im very glad karen gave me the link to these posts -the infomation on this thread in invaluble to me at the present moment in time as im sure it will be for others having the same issues.

[Karen A]

Thanks but the work was all down to Nellie.Karen.

[girl interrupted]

Do you have a child with ASD who is passive or pretends to cope?

I am one

 

How do you get your child's difficulties recognised by professionals, relatives, friends etc.?

they see the small times when it all gets too much

 

How do you help school staff to recognise your child is pretending to cope?

they find me hiding away at lunch and such

 

Do you think the fall out at home after school is due to the child having to pretend?

yes.

when i get home arguments are common as my days so affecting

 

Do you think there can be other reasons for this fall out?

im angry i have to stay at it

 

Do you think the child who is trying to be invisible wants attention or would rather stay invisible?

i'd rather stay invisble a majority of the time

 

Should the LEA put provision in place for a child who is coping or appearing to cope at school?

I wish they would.

 

How do you convince the LEA that the child is only pretending to cope?

they can't

[Diane]

Am I glad I found this thread. It has so been us this last thre years with our now 14 year old son.

We do have CAMHS and Inclusive Resources and the County Special Needs Officer fighting our corner but even they struggle to get an appropriate response from school. So our fight will continue in September.

 

Thank you

[Mandapanda]

Do you have a child with ASD who is passive or pretends to cope?

 

How do you get your child's difficulties recognised by professionals, relatives, friends etc.?

 

How do you help school staff to recognise your child is pretending to cope?

 

Do you think the fall out at home after school is due to the child having to pretend?

 

Do you think there can be other reasons for this fall out?

 

Do you think the child who is trying to be invisible wants attention or would rather stay invisible?

 

Should the LEA put provision in place for a child who is coping or appearing to cope at school?

 

How do you convince the LEA that the child is only pretending to cope?

 

 

This topic is very close to my heart. My child, now an adult pretended to cope, his learning difficulties were recognised but not his ASD. He had fantastic teachers who were very experienced in ASD, they adored him and respected him but could never see the 'real' person. He would do anything not to attract attention to himself. This was in all situations where there were people other than immediate family. I now support and represent parents, and many of them are faced with this problem. I would appreciate feedback on this subject.

 

Nellie.

 

Thanks Nellie.

 

This is definitely my youngest son (and most definitely not my eldest!). He got to 11 years old when he could no longer 'pretend to cope'. Home life stressors and changing schools became to much for him. Now he is just at home all the time.

 

 

 

[sjb]

Oh My Goodness!!

 

It is so nice (in a weird way) to see that i am not alone!

 

Our DS is jekyll and hyde and i have been having such a hard time convincing the school!

 

I have told them time and time again that they are my biggest problem!!

 

I must have told every teacher since he started there and only this he has finally been diagnosed with Aspergers, CAMHS have been brilliant (when we finally got to see them, we had a 2 year wait, and then another 2 years for diagnosis).

 

Now my battle will be with the LEA!!

 

 

[bikemad]

Do you have a child with ASD who is passive or pretends to cope?

 

All the time at places like school or appointments.

 

How do you get your child's difficulties recognized by professionals, relatives, friends etc.?

 

With great difficulty, usually by showing them my diary or videos of my lad when is is not making out he copes.

 

How do you help school staff to recognize your child is pretending to cope?

 

Haha ummm he is changing schools as the current one dont even try to help.

 

Do you think the fall out at home after school is due to the child having to pretend?

 

Definatly....almost every day I get a meltdown/stress attack or whatever the pc word is for it straight after school.

 

Do you think there can be other reasons for this fall out?

 

He is also bullied and not understood by his teacher.

 

Do you think the child who is trying to be invisible wants attention or would rather stay invisible?

 

He says he wants to be invisible all the time because then noone will see ho is odd and different.

 

Should the LEA put provision in place for a child who is coping or appearing to cope at school?

 

O yes definatly but I dont hold my breath that they will!!!

 

How do you convince the LEA that the child is only pretending to cope?

 

Again with great difficulty..only when they learnt he was suicidal at age 9 would they begin to listen.

[liamnmrs]

Hi

Finding this post has been such a relief. Finally we have found others that sound so like L.

He has always been a quiet little boy who does not like any attention and struggles with involvement with his peers. He has been diagnosed with ASD but I am told he is always smiling at school and appears fine. The teachers have had support in school who have advised the use of visual charts and the mood thermometer which he uses at home. However the problem comes when his teacher asks him to use them and he will always say he is fine as he hates the attention. He admits that he feels being good in school means being happy and can not see any difference between the two. His school work is appalling yet his ed psyc test results are just coming in at average, apart from the verbal communication and empathy sections. Yet he can not do the work in a classroom environment.

 

I am at my wits end trying to explain how the episodes at home where he is desparately unhappy and stressed are a result of the anxieties he suffers at school. School are currently collecting evidence for a statement however as he does not like support and shy's away from it, they are not convinced that it will be beneficial.

 

As soon as he comes out of shcool he releases all of his frustrations and it is a constant battle of tears and rants (Idont know what to call them ) till bedtime when he is then troubled with nightmares and wakes frequently despite taking melatonin.

 

Have just had a meeting with school , who advise that the things they have been advised to do, dont work , which of course they wont because he is so anxious and trying to conform they wont. The teacher has asked if I have any ideas what they can do and to be honest I dont. The room is a typical classroom with very busy walls, all of which I know are to much for my boy to deal with. He can not handle the noise of the classroom and has no real friends, ( though they have started a circle of friends programme to assist with this )

 

This has been ongoing for nearly five years and no one sees what we as parents have to deal with at home ( even though we love our children desparately) or the impact on siblings and general family life. .

 

Does any one please have any ideas as to how school life can be made easier for him or who I can approach for help. We have been refered to CAMS who made the diagnosis but dont see them for another two month, have seen a pedeatrician who could not examine him in full because he does not like to be touched, have been through two years of speech therapy which they have said is now no longer of any use and we need assistance in school but can not have this unless we have a statement, SENCO has not come across this before and is unsure theirseleves,we need to see a ot but still waiting 18 months later with a further eight months to go apparently.

 

Sorry to rant but was really hoping to get something from today but yet again it has been a complete waste of time. Have also been referred to behaviour management and parenting classes who after a six week observation have said they dont really deal with this kind of problem and any way we are dealing with things really well at home- Its not us the parents I am concerned about - its my poor little boy who cries himself to sleep in the upmost distress everynight and I can not seem to find any way of helping him.

 

Sorry to go on - any advice greatfully received

thanks

Amy

xxxxx

[gemgems77]

as we can see this is a topic close to many parents hearts by the amount of replies and i am going to be another it has given me great relief to know i am not the only one with this problem mal has not been dx yet but we are in the middle of get one we had big prob at nursery and at reception until a couple of months ago and now he seems to be coping very well at school when i tell the teacher had bad moring bad weekend etc just had narky comments like "seems to be fine at school only seems to play up with you.".. spoke to special needs teacher who is very nice and says the same as many here that he uses all his energy beaing good at school that he relaises it all at home .....the school was the one that came to me and said there was a prob with mal but now i feel that the table has turned and they think im making it all up , i was pleased when his assitiant saw mal screaming and banging his head on me on the way home yesterday and i made the comment "im sure he saves it for me " i hope she tells his teacher what she saw ....

[Flibs]

I know this is an old thread but feel my answers to those questions would be so different from many others

 

for us my son has a diagnosis of aspergers but really doesnt care or mind he has ,he is a lovely lad and doesn't try to be anything other than he is, where I think it is great people have insight to their diagnosis and how they behave/react to others my son does not care as in his mind there is nothing wrong with him , I don't tell people he has aspergers in general and they are often surprised if I mention it ........he has aspergers and we are both proud of that , I will not deny it causes us many many problems and difficulties me more than him probably but he has never been passive about it or tried to hide himself ..to me a child who tries to hide their difficulties is very aware of their situation and can make things harder for themselves (not deliberately of course)

[baranigirl]

very useful thread this one, thank you for this!